Tuesday, July 7, 2009

Update From Houston

We are in Houston this week and so far it's been pretty overwhelming. MD Anderson is huge - much larger than I expected, as is the medical center that it's part of, which is like it's own city. It's hot here (almost 100 degrees) but we're making the best of it (there's lots to do in Houston!) as I got so spend some time with a good friend who I haven't seen in awhile, the Astros are in town (they suck but baseball is baseball!), Phantom of the Opera is here and we can tour Reliant Stadium (where the Texans play football).

I feel overloaded with information, as the opinion of the oncologist we met with yesterday is different than that of any doctor we've met so far, so my list of options essentially got longer yesterday (and got shorter today, as you'll see). I will go into more detail after we meet with him again (after my tests) but his opinion is that now is neither the time for surgery or radiation, but is the time to switch to a more aggressive chemotherapy regimen, one that doesn't sound appealing (not that any do...). The combination he is suggesting would require a five day infusion (in the hospital) with three weeks off between treatments. Once I know more about this I will post more details.

Today we met with Dr. Michael Reardon, a cardiac surgeon that specializes in tumor resection. I can say for certain that if I ever have surgery (still praying that I get the opportunity) this is the guy I want. People come from all over the world to see him (there was a Greek family here today) and next week he and his team are traveling to Israel to remove a sarcoma tumor, so we were pretty impressed with this guys resume. The first thing he told us when he sat down was that I wasn't a candidate for surgery, for all of the reasons we've already known. My goal in meeting with him was to learn exactly what has to happen for me to become a candidate for surgery and I was disappointed that there really isn't a clear answer to that. He left the door open for surgery in the future, telling me that if and when my oncologists thought it would benefit me, he would be open to discussing it.

My goal is to have surgery as removing the tumor is a huge step towards being cured (using the word cured VERY loosely). I have made up my mind, I think, that I won't pursue radiation (to the heart) as this would jeopardize surgery in the future, but I still have to make a final decision as to what direction to go. We joked today that I am going to put a poll up on my blog and let my friends and family decide (you know...like a lifeline) what I should do. I don't know what I need to accomplish to be eligible for the surgery, but every decision I make will have that as the end goal. As I've said, they don't want to do it because it's spread outside the primary location and the metastatic disease is more of a threat to me than the primary tumor at this point. If I am able to fight this cancer off and keep it from spreading to new areas, as well as keep the current areas under control, for six months or a year I think surgery will be a more realistic option. So that's what I have to do...keep on fighting, get more chemo and I will eventually get the treatment I want.

The great thing about this place is that as I interact with people and tell them what I have they don't look at me like people do in other places (that "holy crap...you have WHAT??" look I get when I say "heart cancer"). The oncologist I met with has six other patients with cardiac angiosarcoma and Dr. Reardon removes cardiac tumors pretty regularly. It feels good to find a place where people are familiar with this and where I am not the exception.

Tomorrow (7/8) is our third anniversary and I am so grateful that I have Shana in my life. Three years ago she vowed to be here for me in "sickness and health". At the time those words didn't mean much to either of us, I don't think. We were young, in love and life was good - and we had no reason to think that "sickness" meant anything more than the flu or a cold (or in my case a hangover). Now, those words carry more weight than anything we've ever said and she's held up her end of that deal and I thank god every day for her. I am a lucky guy. We had a great trip to New York City last week to celebrate as I dragged her to a Yankees-Mets game at Citi Field (Rivera's 500th save!), a game at the new Yankee Stadium (which was awesome) and saw Phantom and Wicked on Broadway. We were going to go to Vegas but we decided to stay close to home - and we made the right decision as the trip was AWESOME.

I will update again soon about the rest of what we learn in Houston. I also want to thank my mom and dad as they are here with us, and they continue to disrupt their lives to be here (and everywhere else) to support me every step of the way. I couldn't do this without my family and their support and I spend hours thinking about how lucky I am to have such great parents, such a great brother and sister and such a great extended family. I have no idea what I would do without them. Thank you all so much.

4 comments:

Kim and Don Seymour said...

Happy Anniversary Shanna and Will! Sounds like you are having a great trip. I am so proud of you Will. The courage it takes for you to keep fighting, to have the great attitude you have, is truly amazing and inspiring! Keep postive and stay focused and you will win!!!!

Anonymous said...

Will and Shana:

We hope you had a great Anniversary. Glad to read that you had a blast in NYC! You both are very lucky to have each other, so enjoy every minute of every day together! Your love from your wife, family and friends will help you continue to win this battle! We are always here for you and we believe in WILL POWER!! Keep up the great fight! Love You Always!
Love-
Steph

Anonymous said...

Happy Anniversary Will & Shana! Sounds like you guys had a great time in NYC. Keep up your fight - you will win! Love, Marianne

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